Autism Society San Francisco Bay Area
PO Box 249
San Mateo, CA 94401
Hon. Secretary Diana S. Dooley
California Health and Human Services
1600 Ninth Street, Room 460
Sacramento, CA 95814
July 22, 2014
Re: Public Comment on Goals of New Task Force on Community-Based Developmental Services
Dear Honorable Secretary Dooley:
Autism Society San Francisco Bay Area advocates on behalf of thousands of families affected by autism within our region. We are grateful to you and the Task Force for your nascent efforts to plan for the future of the rapidly growing population of California’s adults with developmental disabilities, the vast majority of whom have never resided in institutions, and an escalating percentage of whom have autism.
Today DDS counts more than 70,000 individuals substantially disabled by autism, up from fewer than 5,000 only 25 years ago. To cite an example at a local level, Santa Clara County had 147 RC-eligible autistic individuals in 1990. Now it counts 3,007.
As we wrote in November, housing and caring for such a vast and unprecedented population of people incapable of caring for themselves, and often exhibiting complex behavioral, cognitive, communication and sensory challenges, will require new and customized community-based care programs and housing facilities.
We believe that planning ahead is necessary to ensure that the arrival of this large autism demographic will not overwhelm the existing care system, leading to mass numbers of dependent young adults without viable options for care or housing.
As the Task Force contemplates the path ahead, we would like to suggest three areas of reform for the group’s consideration:
(1) Promote the expansion of adult day programming options.
Day programs appropriate to meet the complex needs of the burgeoning population of young adults with autism are needed. Of particular concern are the increasing numbers of individuals who present significant behavior challenges, requiring more intensive staffing to keep them and others safe while allowing them to be productive.
The availability of appropriate day programs is a key element of addressing the statewide autism crisis, as success with these programs, particularly nonprofits that create a strong sense of community and provide a reliable support network for families, often alleviates pressure on other care areas.
Potential solutions to consider for creating more capacity in day programs:
• Offer adequate vendor rates adjusted to geographic realities.
• Offer specialized training and behavioral support to access community activities for the more challenging clients, using best practices such as those existing in the school system, facilitating community activities and meaningful engagement without seclusion or isolation.
• To provide suitable space for new programs, create long-term state lease commitments for DD-serving programs, subsidize new facilities, or at allow for priority lease or purchase of publicly owned properties for DD-serving programs.
• Offer loan programs and property tax waivers to foster creation of new centers.
• Expand creative employment options for those able to work, including below-minimum-wage jobs for those with limited skills.
• Expand employment programs available through the Department of Rehabilitation, allowing for work options for people with significant cognitive and behavior challenges.
(2) Promote options for community-based housing emphasizing public-private partnership.
We agree with a growing number of organizations that the time has come for the creation of a Community Development Plan for California’s adults with DD. In the current reality, particularly in expensive real estate markets such as ours, almost no viable options exist for adults with autism unless they come from wealthy families or have the right profile for one of the very few group home spots available. We face shrinking housing options amid skyrocketing demand.
To address the needs of adults with autism of all income levels and dimensions of functioning, nonprofits and general property investors must be empowered to create new housing solutions for ASD and DD adults, including collaborative homes, group homes, multifamily projects, and clustered communities. Public-private partnerships can help solve our housing dilemma.
Viable projects will require rental income, which is only possible with rental vouchers, given that this population by and large cannot earn income. They will also depend on reduction of costs, which can come in the form of property tax waivers, reduced mortgage costs, reduced utility costs, and costs for behavior-related repair and maintenance through a DDS fund.
The centerpiece of a new system should be meaningful choice. For many with autism, integration in a mainstream, integrated environment is not always possible due to challenging behaviors, social incapacity, sensory disorders, space needs, and safety and supervision considerations.
Potential solutions to consider for supported housing:
• Housing vouchers for RC clients through HUD 811, promoting a wide array in choice of appropriate housing type and location.
• Property tax waivers for all forms of autism/DD housing.
• Priority use of public lands or income from former DDS property to house RC clients.
• Allowing RCs to use Purchase of Service funds to seed new housing projects.
• Enhanced behavioral and aide supports for adults with substantial behaviors residing at home or shared settings.
(3) Reform community care regulations.
Creating community-based solutions for adults with autism is not just a matter of funding, it is also a matter of breaking new ground in programming types. We inherited today’s CCL regulations from an old era before the autism explosion, resulting in a mismatch between the old system and the nature of the intensive needs of tens of thousands of young adults with autism.
Potential solutions to consider for licensing:
• Convene an expert committee to revamp CCL and DSS regulations to reflect actual needs of adults with substantial autism.
• Authorize a wide variety of housing solutions with greater flexibility in operation. Many adults with ASD require highly structured and individualized programming when at home during the day, requiring a higher level of staff training and supervision, and substantial physical space.
• Cut unnecessary red tape to facilitate proliferation of parent-created group homes.
Finally, we would like to suggest that given the new scope of work before the Task Force that the chair consider adjusting the committee to emphasize individuals with experience in the field of community-based supports, programs and housing.
Again, we thank you for convening this Task Force to address such an urgent social need, and thank you for your consideration of our comments. We look forward to working with the Task Force in the months ahead, and can be reached at firstname.lastname@example.org.
Very truly yours,